Parts to a Whole

When one hears the word epidemic, highly negative connotations arise. Words like fear, widespread, and contagion surface in our minds. These connotations primarily reference the group affected, or soon to be affected, rather than specific individuals facing the illness. An epidemic makes us question the whole and how it will suffer. We do not normally consider the individuals’ losses as they become just a small part of the equation. However, it takes just one individual, one part of the epidemic, to spread the illness exponentially, so how does one not focus on the selective parts of this whole? What happens when we analyze the specific people that are a part of an epidemic?

In the text, Clay’s Ark, by Octavia E. Butler, it is seen that a group of individuals who have ventured out to space had contracted an extraterrestrial disease through the form of a parasitic organism. The symptoms that arose from being infected with the organism drove the individuals who survived to return back to Earth in order to infect others (Butler, 457). Only one infected person survived the attempted crash of the ship, and despite the horrific landing, the organism drove him to survive in ways not humanly possible. This one individual comes into contact with an isolated group of individuals and in turn, they all become infected. The epidemic begins, and with the amount of humanity remaining in those infected, they devise a plan to keep themselves contained. However, even with keeping themselves isolated, they still give in to the organism’s ability to drive them to infect others. They conduct this process in a controlled way, infecting a few individuals at a time to keep reproduction occurring. Those newly infected struggle with the reality of having to remain isolated and a part of the group that spread the disease to them. Before the organism took full reign on the freshly affected individuals, they attempt escape, risking the spread of the illness, but driven to protect their desire to be free.

Upon this situation and plot of the text, I question the difference in emphasis on the individuals’ a part of the whole versus the whole itself. What value should be held to a higher standard? The individuals’ drive for freedom while risking the inevitable spread of an epidemic or the containment of those infected in order to protect the whole? In either instance, something must be sacrificed, and both question morality. One may consider it more ethical for those infected to force themselves into isolation, even if it means suffering from the side effects of the illness and giving up their freedom. In this case, the disease would not spread without external forces as those infected would refrain from any contact with the outside world and eventually pass away. At that point, once they all are deceased, it would be assumed that the disease dies with them, ending any chance of a full-blown epidemic. However, this style of life may come across as meaningless to some, as those isolating themselves sacrifice their freedom to leave isolation and any chance of experiencing the rest of the world. On the other hand, if those infected practice their freedoms and leave their isolated premise, an epidemic is guaranteed to occur, resulting in the harm of many. In this case, those with the disease do not personally face any restrictions as they go about their normal lives, that is, as normal as it can possibly be while being infected. Upon this freedom, they put a much larger whole at risk. This situation does not only apply to this text where a group is infected with an extraterrestrial disease, it can also be relevant in today’s world.

In terms of the medical field, this questioning of personal gain versus protecting the whole can be applied to many of the experiments we have read in our course through the text Medical Apartheid by Harriet A. Washington. Throughout the book, researchers take away individuals’ freedom and consent through unethical experimentation to obtain data they believe may help a greater whole.  In one experiment, doctors injected a man who they presumed to not make it through the night with plutonium (Washington, 216). They did so without consent, and they hoped to soon autopsy him after the injection in order to learn more about the radioactive substance’s effect on the human body. The man survived, and escaped the hospital upon learning what the doctors had done. His freedom was stripped for the rest of his life as the radioactive substance would never leave his system. To this day, experimentation like this exists, where the individual’s freedom is sacrificed in the belief that it will benefit the greater good. The question posed earlier instills, and I ask you readers, where must sacrifice be made, and how does one overlook the individual’s role in an epidemic?

Humanity’s Vital Role in Informed Consent

Written by Kaysen Bickel, Andrianna DeHart, Noah Lieberman, Julia Ophals, and Ariana Vidal

In Medical Apartheid by Harriet Washington, she states that informed consent is “…not a signed piece of paper, but rather the fluid and continuous process by which research informs the subject detail of what he or she proposes to do, why it is being proposed, and what possible consequences the experiment carries” (Washington, 55). Washington further explains that with informed consent, as the study proceeds with alterations, the researcher must allow the subject to withdraw from the experiment at any point (Washington, 55). By this definition, our understanding for what constitutes informed consent can begin to form. However, the nature and importance of informed consent may only be obtained after understanding what it is not. In Octavia Butler’s Clay’s Ark, consent is never directly defined, yet she outlines many experiences where it is lacking and presents itself in a format comparable to a deception study.

The definition of informed consent derived from Washington applies to those who possess humanity. Once humanity is removed, consent no longer exists. Within Medical Apartheid, researchers whose main goal is to obtain data lose sight of their subjects as humans and view them merely as a statistic. For instance, in 1932, a large group of African American males were utilized as an ongoing statistic in the Tuskegee Syphilis Study by the U.S. Public Health Service (Washington, 157). These males were denied informed consent by the PHS as they were deceived from the beginning to the end of the study (Washington, 157). At this time in Alabama, it was promised that those who were ill and tested positive for “bad blood” (CDC) would receive free healthcare. The term “bad blood” had no true definition, as it could entail testing positive for anemia, syphilis, or a number of other illnesses. The group that had “bad blood” were studied together, allowing those with syphilis to be in contact with those who merely had anemia. The men believed that they all shared an illness, being unaware of the risk of infection. Not only were they misled in the beginning with their false diagnoses, they were also never treated. The men with syphilis continued getting worse, and those who did not have it, contracted it. Meanwhile, outside of the study, penicillin was determined to be the leading treatment for syphilis, and these infected men were never to receive it. 

Not only were these men unable to leave the study and seek actual treatment, the subjects were never informed of this being a study to begin with. Believing that they were simply being helped, the men would not have known to seek treatment elsewhere, enabling the researchers to contain their subjects. Overall, the men did not know they were participants in a study, were at risk for infection of syphilis, and were not being properly treated. At no point was informed consent present, therefore no permission could have been given. Even after the men in the study died, their bodies were autopsied to see the progression of syphilis. They were consistently deceived throughout the experiment and into their deaths with no means of escape, serving solely as a statistic for PHS researchers. As the experimenters were driven by their mere need for data, all humanity dissipated, and informed consent could never surface. 

A similar narrative is seen in Clay’s Ark, where the characters battle with consent and whether or not it can be given when aspects of their humanity are lost. The infection the characters contract diminishes their human characteristics. As explained in the text, “The disease doesn’t go away. It just settles in and stays with you and you pass it on to strangers and to your children” (Butler, 525). The disease kept them from controlling parts of themselves after infection. It came from a different planet which resulted in inhuman symptoms. From the perspective of an infected character, Butler writes, “We’ve lost part of our humanity. We can lose more without even realizing it” (Butler, 543). As a result, they display animalistic tendencies and their children seem to almost become animals all together. The book emphasizes these characteristics stating, “The baby, when it came, looked like a gray, hairless monkey,” (Butler, 585). These traits further the idea that humanity is lacking, meaning consent is lacking as well. The book characters attempt to contain the diseased in their enclave, however, they constantly fear and plan for the incident of its spread into an epidemic, fearing that all humanity would be lost (Butler, 583). The infected were unable to give their consent and were left with only the choice to live or die. While they seem to have this choice Butler notes, “You think you can choose your realities. You can’t” (Butler, 522). The lack of options available to Butler’s characters is similar to that of those in the syphilis experiment in Medical Apartheid. The participants were unable to choose their realities as they were misinformed throughout the process of the study with regard to their diagnosis, treatment, and overall role in the experiment. To give the patients a fair choice and treat them humanely informed consent must be provided and the patients should be able to retract it at any time. 

Washington states, “research is an utterly essential and desirable component of treatment, but its subjects must be aware that they are participating, must be informed, must consent, and must be allowed to weigh the possible risks and benefits” (Washington, 7). A deception study, classified as research is where participants are deceived in order to obtain unbiased information. Therefore, the full knowledge of the study required to give informed consent is revealed only after the experiment has been conducted. Due to this, true informed consent cannot exist in this type of study. How can someone back out when the damage is already done? In Washington’s Medical Apartheid, the scientists at the time were using human test subjects to observe the effects of radioactivity on the body. Washington recounts the story of a man named Cade who arrived at the hospital with severe injuries, and doctors did not think he would make it through the night. With this in mind, they injected plutonium into Cade WITHOUT his consent in hopes to study its effects on his deceased body. Plutonium is described as a “fiendishly toxic, man-made element [that] is medically devastating because it causes cancerous changes in bodily tissues by ejecting high-energy alpha particles from its nuclei” (Washington, 444). This case and many similar to it, can be associated with the Tuskegee Syphilis Study. In these cases, patients thought their doctors were treating them and caring for them when in reality they were deceiving them as they conducted research without their knowledge. In these cases, the effects of the research could not be reversed, which killed many people. The participants in these studies could not withdraw themselves because they did not know they were being experimented on. As Washington states that for informed consent, the researcher must allow the participant to withdraw at any point, and in both of these cases that was not possible (Washington, 55). 

A similar theme runs rampant through Butler’s Clay’s Ark, much like the virus; once transmitted, there is no turning back. The characters of Clay’s Ark, Blake and his daughters, were ambushed by those from the enclave while traveling down a desert road. The infected individuals, such as Meda and Eli, took them back to their enclave where the majority of the text takes place. They expected Blake to be willing to come with them and help yet revealed no information about what it was needed for. No one from the enclave was willing to explain the circumstances because they knew they would try to escape. Blake and Meda have a conversation after she has infected him without his knowledge: “It’s a disease, she said. Have I been infected? She turned her head to look at him, smiled sadly. Oh yes” (Butler, 485). Meda continues, “She lifted his right arm, exposing the bloody scratches she had made” (Butler, 486). The deception used by Eli and the others is purposefully employed knowing well that after they revealed that Blake and the girls were infected, it would be too late for them to turn back. Those of the enclave infected a few to benefit what they viewed as the greater good. A trial such as this is to derive greatly desired data is seen to be yet again completely unethical; it leaves its participants with irreversible effects.

In the context of our course and the grand scheme of things, understanding the nature of informed consent is crucial for building a set of governing values and principles to guide us through life without doing harm. When we find ourselves in the positions of power that come inherently with the role of being an experimenter, it is of great importance to ensure that those involved are being treated properly. Care must be taken to make sure the experiment will at no point deprive participants of their humanity. The importance of viewing test subjects as human beings rather than variables in an experiment must be foremost in the mind of the researcher. If this perspective is compromised, harm is inevitable whether it comes as the result of carelessness or deliberate cruelty. There is very little difference between the two for someone who has been harmed as a result. 

Trust must not only be given, it must be rightfully placed and maintained. Without ensuring that consent is being provided from a place of understanding, abuses to human rights are bound to occur or be perceived to occur by those who have been experimented on. By entering a study, participants place a level of trust in whoever is conducting it. If that faith is abused, taken advantage of, or exploited against the best interest of the participant, trust can be lost along with consent. As Washington states, “Informed consent [is] revocable at any time during the course of treatment,” and the patient should leave with no long-lasting harm done to them if or when such consent is revoked (Washington, 232). Though a person may voluntarily submit themselves for experimentation, ethical research demands their ability to back out. Informed consent is procedural and sustained, not given once irrevocably.

Radioactive Oats, Anyone?

After my last blogpost, I found the question I pondered last time still lingering in my mind; how many other stories of exploitation are out there going without notice? In my journey to discover more under appreciated stories of those victimized by the medical field, I came across another intriguing excerpt in Medical Apartheid by Harriet A. Washington. This time, the story involves a group, not just an individual, being manipulated. Also, uniquely, the group is being undermined by professors. In this case, those victimized were a group of young orphaned boys.

During the 1940s and 1950s, Quaker Oats Company teamed up with Fernald State School to conduct radioactive experiments on the young boys the school housed (Boissoneault, 2017). The professors conducting the research gave the boys radioactive laced oatmeal and milk, specifically radioactive iron and calcium (Boissoneault, 2017). The boys at Fernald State School were also directly injected with radioactive calcium, as these experiments were conducted to see how the body absorbs and processes calcium and iron (Boissoneault, 2017).  At the time these experiments were occurring, Quaker was being backhandedly targeted for its products possibly inhibiting iron absorption due to the high level of phytate in the oats. Therefore, the company invested in the researchers conducting the radioactive experiments to prove the media’s claims invalid (Boissoneault, 2017). Quaker Oats Company provided the oatmeal that was then laced in the experiments (Boissoneault, 2017). As stated in Medical Apartheid by Harriet A. Washington, not only were these boys orphans, they were primarily African American, as revealed by video footage of the school’s housing (Washington 233).

It shakes me to my core to process this story, and I once again am questioning the world with how this is even possible. This story in Medical Apartheid baffles me and makes me want to dive deeper to uncover the details. How could researchers take advantage of such young boys that are without any form of parental representation? Those in charge of the experiments derived data that showed calcium enters the bloodstream and then quickly advances to the bones. They later claimed these results provided the foundation for osteoporosis research (Boissoneault, 2017). I wonder, was the advancement in medical knowledge worth the violation and exploitation of children? My animosity of this experimentation fuels my inquiry of the medical field and those who provide the data for advancement within it. When further looking into those who ran these studies on the orphan boys, I discovered the unimaginable; a research article was released for publication on these experiments in 1955 (NCBI).  Not only were these young orphans used as test subjects as they ate their breakfast, they were made into a publication. It appears the link between medical advancement and exploitation of human beings finds strength in not only unvoiced adults, but children as well.

The text we are continually revisiting in this course, Medical Apartheid, has brought this story of the Quaker Oats Company and Fernald State School to my attention. This book consistently raises awareness to these low-profile cases of those who are neglected through the medical field. I hope to repeatedly bring these stories to my readers’ attention so that they too continue to dig deep into uncharted paths. If we do not uproot these problematic tendencies of the medical world, who will? The lack of information available to us, the public, regarding these unvoiced stories is shocking and truthfully unacceptable. With these blogposts I hope to uncover even more stories like the one I have just discussed and provide them the voice their victims never had.

Silenced Stories: Unveiling the Enabler

I have always hoped to one day work as a health professional, and this course is opening my eyes to the weight this field of work carries. In particular, I cannot stop thinking about the connection that has been crafted between medical advancement and exploitation of human beings. I wonder, how did this link grow so strong? What enabled this correspondence to continue for such a profound duration throughout our nation’s history without being detected or ceased?

Within the text Medical Apartheid by Harriet A. Washington, lays an exquisite yet horrific insight to what our nation’s medical history consists of. A passage that particularly caught my interest was the case regarding Bessie Wilborn (Washington 134). Washington describes how Wilborn died around 1950 and that she had Paget’s disease, an illness that results in the breakdown of one’s bones (134). Wilborn’s body was autopsied by Dr. Peter B. Wright and her skeleton was then used in a pathology laboratory at the Medical College of Georgia (MCG) for many years to come (Washington 135). Wilborn’s skeleton was first shown at one of Dr. Wright’s meetings as Washington states, “…he displayed at that year’s winter meeting of the American Academy of Orthopedic Surgeons in New York City. Her bizarrely arresting bony cage won Wright a medal for originality” (135). The daughter of Bessie Wilborn, Frances Oglesby, attempted to receive justice for her mother’s remains in a court case against the MCG in 2003.

I wondered how Wilborn’s situation was even possible. How could her bones be practically stolen from herself and her family and used in a medical college without anyone asking where they came from? I further examined Wilborn’s case and discovered the court ruling of 2003, the Board of Regents of the University System of Georgia v. Oglesby. The MCG offered to return Wilborn’s remains to Oglesby and her family and pay for the burial arrangements, but on the condition that Oglesby would rid her claims against them. Oglesby declined and in the end, did not win her case, as the court determined too much time had passed since the incident for her claims to be validated by law. Wilborn’s remains were to stay with the MCG unless Oglesby was to work out another arrangement outside of the legal system. The court suggested she return to the MCG’s prior offer. I then googled “Bessie Wilborn Medical College of Georgia”, and the sheer lack of results was alarming. Only three results actually pertained to what I searched for. This left a pit in my stomach as all I could think about was that her story is still practically hidden to this day.

In this course so far, (Literature, Medicine and Racism), I have been rapidly exposed to shocking realities of the medical world I did not yet know existed. The texts we have been reading have pushed me into a realm where I question the medical field and its motives. One example of this being Wilborn’s case in Medical Apartheid by Harriet A. Washington. My intentions of reiterating Wilborn’s situation and unveiling what our medical system’s history consists are to leave others with the same questions I cannot stop thinking of myself. Where does the authority and secrecy for unethical medical operations stem from, and how do we increase transparency for those that have been victimized? I also hope this blog post compels others to dive into silenced stories like those of Wilborn and Oglesby whose exploitation was kept in the dark.